Cystic Fibrosis

August 2020


Dear Constituent, 


Thank you for writing to me about cystic fibrosis. I have read your email carefully and noted the key points that you raise. 


I was delighted that NHS England reached an agreement with Vertex Pharmaceuticals which includes all three of their cystic fibrosis medications, Orkambi, Symkevi and Kalydeco. This has given hope to so many patients and their families across the country after the many months of negotiations that I know were so frustrating to the families concerned. It is thanks to the hard work of campaigners as well as the many colleagues in Parliament who took such an interest in this issue that we are in this position. Access to all three drugs was agreed not only for all current licenced indications, but for possible future licence extensions too.


Wales and Northern Ireland also benefit from the terms of this agreement, and it is understanding that Scotland has reached a separate arrangement with Vertex.


The drug approval process in the UK is extremely rigorous, in order to ensure that treatments provided to patients are safe, as well as being effective. All treatments are required to undergo stringent clinical trials, licensing, and appraisal by the National Institute for Health and Care Excellence (NICE) before being made available on the NHS.


NICE processes have been designed to offer the best possible treatments for the best possible prices, protecting patients and taxpayers over pharmaceutical companies. I fully support NICE, who do a very good job in difficult circumstances, and believe that an independent assessor is vital in ensuring only the best and safest treatments reach patients.


I will continue to closely monitor the review process for Trikafta, and all other CF medicines, to ensure that they are safely and efficiently assessed.


Thank you again for writing to me.


With best wishes.


Kind regards,


Jonathan Lord MP

Member of Parliament for Woking